Am I Crazy?

[kawhite]

Hi Everyone:
I found this site while looking for information on Valve Repair/Replacement. I was diagnosed with MVP when I was 10 or 11 and never paid too much attention to it. In 1988 I had endocarditis and my all of a sudden my heart became a priority. In '90 I was told I would probably need valve replacement within 15 years.
Well three weeks ago I visited my cardiologist because I have been feeling short of breath more often, he did an echo and said to come back the following week so he could compare the echo to a previous one.
When I came back the following week he told me that because of problems he could not get the previous echo but that based on my symptons surgery was indicated. He was ready to schedule it right then. I resisted wanting to talk it over with friends in the health field so he told me to call when ready. Well I'm ready so I'm calling him Monday morning to get this done. My problem or maybe it isn't a problem is that at this point while I feel some nervousness about the surgery having the surgery has got to be better than this constant worry I have over my heart. It has become an obsession every little creak and pain has become a heart issue for me. I'm thinking that maybe I should be more worried about the surgery. Am I in denial, all my medical friends tell me the surgery while difficult is very successful and not to worry. Am I making any sense here?

 

[Nancy]

Hi-

Welcome to this wonderful site. You are among friends here. We all understand about this surgery and other things as well.

You have a wonderful attitude about heading for surgery and that is a good thing.

The surgery is well perfected, the surgeons who do this are very expert at what they do and are inside people's hearts almost every day and sometimes doing more than one operation. Everything that you have wrong inside there they can fix. While in the hospital, you will be taken care of byt terrific medical personnel, and in fact, your hospital stay will not be that long, 5-7 days on average. You'll be up and walking by about the second day, and some have done this sooner.

The surgery is done to save your life. Years ago, when folks had this kind of problem, they couldn't survive, but now things are all different.

Heading towards surgery is stressful. No one will tell you any differently. But after all the healing is done, you will be feeling much better.

Please take the opportunity to browse around the site and try to read as much as you can. The more you know, the better it is for you. Understanding about your condition is s big help in diminishing a lot of fears.

 

[Ross]

Welcome to our humble home kawhite and no, your not crazy because I already have that slot filled!

May I make one suggestion-Get a second opinion before diving into surgery. You may or may not be bad enough to have it done yet. If you feel absolute confidence in your physician, then do what needs to be done.

We were/all are tense before surgery. That's just plain normal, but as Nancy told you, it's so highly refined and specialized now that the risks are small and the benefits are great. Read around and if you have more questions, were here to help.

 

[kawhite]

Thanks and I'll be around more

Thanks and I'll be around more

Thanks for the quick replies. I'm pretty confident that I need the surgery. On an almost daily basis it seems I lose breathing capacity. It's a problem just walking to the subway (2 1/2 blocks).
Plus the surgery will be done at Lenox Hill Hospital in NYC which it seems is one of the best. I have been told that they will try repair but will replace if necessary. I'm leaning to a mechanical valve as I don't want to do this twice or three times since I'm only 46.
Plus as I said I am so tired of not be being able to function like I used too and much of my current worry about my heart would hopefully fade into distant memory.

 

[hensylee]

Welcome, Ka. We have several NYC members - Nicole (ILoveNY), Lisa, Evelyn's Tyce - I am sure they will be along to add their welcomes and experiences. You will have all of our support while you are going to your surgery date and as long after as you want. You will get lots of information in the days coming. Weekends get a bit slow, but they'll all be in tonight/tomorrow. God bless

 

[pillarpaul]

Welcome and a suggestion

Welcome and a suggestion

Hello and welcome to this great place. I, too, recently came to the conclusion that I need valve replacement surgery very soon (actually, next month). This has been a fantastic place for me to pick up information as I prepare for the day. I do have one suggestion, though. To amplify Ross's suggestion, please make sure you have ALL the information you need. I know it's not fun to have the symptoms that go with a bad valve, but I didn't see anything in your post to indicate that everything else was defintiely ruled out. Please make sure they do a heart cath well before your surgery. Your symptoms can also indicate a blocked artery. Also, I wouldn't accept that he couldn't find the other echo results. There are pretty good measurements that can tell you where your heart size or vlaves are that I would want before I made the final decision. I was first diganosed almost six years ago and my doc was ready to schedule me then. I learned about heart sizes, etc. and realized I could hold off for quite a while, which obviously I did. Again, I certainly understand wanting to just get it done but unless your doc says it's life-threatening, you may want to pull back just a little.

Whatever you choose, we all wish you well and we'll be there for you.

Paul

 

[Creed3]

Hi kawhite,
I am so sorry to hear that you have to go through this. Like everyone else here has already said, "you are not crazy". Everything you feel is normal. It does seem like you have a good view regarding the surgery. Hopefully, they will be able to do your surgery right away and you won't have to wait around. I also agree with Ross about getting a second opinion, but if you feel confident with what you are being told, then go with what the docs are telling you. I'm sure everything will go just fine with the surgery and it is a relief to get it done and get back on track with recovery. Good luck with everything and if you need to talk or just vent, please do so. That is what we are here for. Everyone here is just fantastic.

Take Care!
Gail

 

[Granbonny]

Hi Kawhite

Hi Kawhite

If you like your Cardiologist and trust him..then go for it..BUT in the meantime..try to read as much on our forum as possible. Takes several hours..but I bet you will be more at ease..reading how many of us have gone through VR..and here we still are..supporting all of our new members. I had a mech. valve one year ago this Tuesday..and just got though baby-sitting my 3 month old Grandson while his parents painted outside.. He weighs 13 lbs.. Carried him around all day..diaper changes, ect. NO problems..Life is good after the surgery..BUT..remember it is a slow recovery..one day at a time ..You will read all this in other posts. Coumadin has been NO problem for me. Let us here from you again. Bonnie

 

[epstns]

Hi kawhite,

While I cannot answer much about your specific symptoms and their significance, I CAN attest to the fact that you are not crazy. I am one of those who have been diagnosed with a valve condition but am not yet in need of surgery. Hardly a day goes by that I don't feel a little something and wonder if it has any heart significance. Be very careful lest you make yourself really crazy! Most of these things we feel have been there for a long time, but our senses are now on "high alert" for anything that relates to our hearts (or MIGHT relate to it). If the pain or strange feeling happens often, call your cardio and ask about it. That's one way to maintain some sense of sanity.

 

[EVELYN]

Hi Ka

I'm Evelyn whose husband, Tyce had AVR surgery this past June at St. Francis in Roslyn. I'm assuming you're from the city/Queens, yes? We're from Aquebogue, our east on the island. Who's the surgeon at Lenox Hill? If you'd like a second opinion, we HIGHLY recommend Dr. James Taylor at St. Francis. He did Tyce's surgery and we can't say enough about him. I'd be happy to give you his number, etc., if you'd like it, just let me know.

Welcome to a wonderful place!!! Everyone here is supportive, and they're the most knowledgeable group around. Believe me, if they don't know the answer to a question, they'll definitely find it!!!

Please feel free to ask any questions you may have. We're all in this boat together!!

Again, welcome, and if I can help you in any way, just let me know.

Evelyn

 

[pegne]

ka

ka

You are right about one thing, it is better to have the surgery than to worry about your heart all the time. I have been through 4 heart surgeries and I guarantee that the worrying is the hardest part. You will be in my thoughts and prayers. Please let us know when they set the day for. Peggy

 

[Mb]

Hi Ka!

Welcome to this site! My husband has two St. Jude valves, implanted in October of 2001. We knew since he was 19, that some day he would face having to have at least one valve replaced. Unfortunately this "advance" knowledge in no way helped us. No, we almost never worried about it. Then, two years ago he was misdiagnosed with pneumonia. He was actually in congestive heart failure. Now, that's a long story. But the end result is that it went too long. His heart has some remaining issues that are being addressed, and his health is quite compromised. So, I strongly urge you, that if your Dr. and even a second opinion think that you are a candidate for the surgery....then run for it. You want the very best recovery that is possible, and if it is delayed too long, then permanent damage to the heart can result. If you cannot walk 2-1/2 blocks without being short of breath, then your symptoms do seem to indicate that you need to do something. Trust your doctors. Get a second opinion, then go for it. Best wishes on your journey.
Marybeth

 

[kawhite]

UPdate

UPdate

Thought I would fill you in on the latest, Sunday while walking down the subway stairs in Manhattan, my legs got all rubbery and I was short of breath, I decided to go to Lenox Hill emergency room. To make a long story short, I just had an angiogram and it seems my arteries etc are very clear, however my valve is severe. I have a meeting with the surgeon tonight, whom I am told is one of the best in the country, they told me the name but I can't remember it right now. (I'm writing this from my hospital bed). The surgery may be this week. Thanks again for the support it is very helpful and I'll keep posting.

 

[Granbonny]

Hi Ka

Hi Ka

Well, this is a first..member writing from hospital bed before unknown surgery..You are in the best place right now. Do let us hear what the surgeon has to say when you see him tonight. Are you at Lenox Hospital? Take it nice and easy. You will be fine. Bonnie

 

[Georgia]

Well, hi there KAWhite! Golly - when you decide to do something you do it up right!

If you can get the surgery this week, I vote you go for it. You know how bad you feel. And it sounds like you're in the right spot to get a good job done.

Hope you have someone at home to help you when you get out. That's really critical - you'll be fairly helpless for a short while.

Everyone here in VR.com-land is rooting for you. Keep in touch as much as you can.

Georgia

 

[kawhite]

I'm scheduled

I'm scheduled

Hi:
Well the head nurse came by to tell me that surgery is scheduled for 8:30 am Thursday Dr. Loulmet will be doing the surgery. He was listedas one of the top 100 surgeons in NY Magazine, not sure that means anything but it makes me feel good.
Well I am nervous now that it is smacking me in the face but nervous is ok. This site was very helpful and I look forward to telling all about it. Should be good for a few drinks(non-alcoholic ) . Talk to all of you soon.

Kevin

 

[Nancy]

Holy Smokes Kevin!

Holy Smokes Kevin!

Hi Kevin-

You win the prize for speedy scheduling. No dust under your feet. I'm wishing you the very best surgical result and we'll be anxiously waiting to hear how things went.

Bon Voyage and smooth sailing!

Talk to you later.

 

[Granbonny]

Hi Kevin

Hi Kevin

I think we all thought you were a girl Been calling you Ka..Well, just lay back, relax..bet they will give you a good sleeping pill...and a good feel shot early in the morning..You will be fine..Do you have someone there to post for you tomorrow. This has been a busy week for members. We had Ray, on Monday..in Charleston. S.C. He's fine..Harvey yesterday in Nova Scotia..Jerry tomorrow. You and on Friday Charlie Brown...You will feel so much better in a few weeks. Need to read all you can on pre-surgery about what to do when you get home..Good Luck. Bonnie

 

[Creed3]

Hi Kevin,
You may not get this before your surgery, but I want to wish you all the best tomorrow. I'm sure everything will go just fine. Soon this will all be behind you and you will be on your way to recovery. You will be so glad when it is all over. I send you all my thoughts and prayers. Please let us know how things go.

Take Care!
Gail

 

[sylviayasgur]

hi kevin!
by the time you read this, you will be recovering from your surgery.
wow, that was so fast. lucky for you, you had no wait- time.
i'm sorry i didn't get a chance to wish you luck, but i hope you or someone will post to let us know how you are doing.
all the best, sylvia